school boy with a backpack

Change is hard.

Change is hard good.

Change is good.

This is my incessant mantra this week. These past few weeks have been beautiful and tough. Our family recently moved and unknowingly crossed that magical line dividing two counties, and everything has changed. Change is hard. 

We have a different address. Different utilities. Different commute. No big deal, right? Moving is stressful, in and of itself, but this move was necessary. It’s a huge step up in the world for our family, and I am so thankful that we were able to make that step.

Different school system. That one took hold of us. Even for a typical child, changing schools is dramatic: new teachers, new friends, new routine. My son, however, has autism. The word “change,” in his world, can be like a big grizzly bear, snarling and slobbering and tearing apart the way we function.

His school is a part of what I call his “team” — the professionals, teachers, physicians and other people in our life who make his success possible. His previous teacher is a rock star who loves my son dearly and has become a good friend. His previous aides are caring and wonderful individuals. The progress he has made and the goals he has attained during the past two and a half years has been stunning. And he was supposed to be with this part of his team for one more year.

But that magical line between the counties changed everything. All of a sudden, we took on the dreaded status of “nonresident.” The process to stay in the previous school system was tedious and time consuming, which finally ended in a decision to deny his placement. And although I fought the battle all the way to the state, I was reminded that because my boy and I “do not live in the county any longer, the school division is not under any duty … to your child.”

I was devastated. His teacher and his aides also were. And for a moment, it seemed the world would crash, along with all the progress he was planning to make, again, this year. The prognosis for the new school system was uncertain at best, and I felt very uneasy.

Fast forward with me.

My boy started his first day at his new school on Monday morning. We had gone to meet his teacher and see his classroom on Friday evening, and while we were impressed, we were still anxious about the change. Would he feel comfortable here? Would he, if overwhelmed, begin to act out? To regress even? Would he be as loved and well cared for here as before?

When your child can’t verbally tell you about his challenges or even how his day went, your mind reels with questions in an unknown routine. His first day was a little rocky as was his second. But each afternoon, his teacher greeted me with a smile, a kind word and positive thoughts for the day.

Then it happened. I picked him up yesterday afternoon to find out that he had a “fabulous” day. His transitions were already improving, he worked well and he was becoming comfortable with his surroundings. I am so thankful to know that he is adjusting so well.

Change and transition are a natural part of life in this world, but they are not typically strong areas for my boy. To know that he is handling them with resilience and strength in this new chapter of our lives gives me a more positive outlook for his future, and someday, his independence. For others, these small steps may be minor, even expected. But for us, they are enormous in the joy, relief and hope they hold.

I still miss the team we leave behind, but I’m holding onto this new hope for what the future holds for my sweet boy. I write this in hopes of reaching out to those of you who may need this encouragement. Even if things aren’t going as you planned, there is hope. Our babies are more resilient and strong than we may imagine. And, like us, sometimes they have to step away from the familiar and out of their comfort zone to find that strength.

Change can be good.

Follow this journey on The Starlit Mama.

Lead photo source: Thinkstock Images


What’s it like when an adult is diagnosed on the autism spectrum?  

If you’re like me, it was likely a difficult journey reaching this point, one filled with confusion, hurt and a pervasive sense of loneliness. Parents may be gone. Family or friends may have pushed for a diagnosis or have done their best to prevent it. Even when it’s anticipated, being told you’re autistic is a moment of truth unlike few others in life.

No one pushed me toward a diagnosis. I did it on my own. After so many years, I had finally noticed a connection between my behavior, the reaction of others and my being so different. This had always been my circle of hurt and flight: not fitting in, not understanding why and running away.

This time, I saw the pattern. You can Google why an otherwise taciturn person will launch into a pet subject and try to talk the legs off a table. You can take an online autism test every day for a month and never get anywhere near failing, no matter how hard you try. You can finally say, “Yes, this is me … and stop right there.” I could not, even when my wife asked me to.

I was lucky to find a center that specializes in autism research. It took months to arrange an assessment and still more weeks to finally hear the results. My doctor was compassionate and patient. I only wish I could go back now and tell him all the things I didn’t realize were important to the diagnosis, so we both could more easily recognize my autism.

I left the appointment with a folder containing the details of my assessment, a formal written diagnosis confirming that I had a disability, plus a contact sheet listing online resource sites, local mental health professionals and community support groups.

I fell so hard and fast. There was nothing in the folder explaining how miserable and hurt my wife would be when I told her about the diagnosis. There were no warnings that telling others wouldn’t make them believe my news, that I wouldn’t wake up the next day with a permanent hall pass for being different or that my depression and anxiety wouldn’t finally melt away.

There are no adult support groups where I live, no sympathetic friends or 100-day plans for the newly diagnosed who isn’t a child. Maybe it’s not like this for everyone. I was on my own and could no longer tell where the descriptions in the Diagnostic and Statistical Manual of Mental Disorders (DSM) ended and I began. If I still existed at all.

I can only assume that providing a list of mental health professionals is standard operating procedure following a diagnosis. Adults wrestling with their diagnosis may need professional help putting the pieces back together. I have no doubt it’s a necessary and helpful step for many. It wasn’t for me.  

I called one of the psychiatrists on the list, in part because I was anxious and depressed. What I really wanted, however, was someone to explain “me” in words I could understand and help me begin rebuilding my life.

Instead, the psychiatrist couldn’t understand why he had been recommended, talked endlessly and interrupted anything I said, only pausing periodically to have me read a page from the DSM and asking if I thought that was me. I left his office with prescriptions for an antidepressant and an anti-anxiety drug. Perhaps he worked better with children and parents.

It took me three months to get on and finally off the drugs, during which I read everything I could find about autism. Apart from Tony Attwood’s books, the best were those by adults on the spectrum sharing their experience of life. With their help, I found my way to online blogs and websites by and about adults and organizations advocating the right to be heard and supported when needed. I connected with people like me. It was the road back.

This could have been an easier journey, certainly a less painful one. However, that might have required a diagnostic community focused less exclusively on children and the funding it generates, doctors more thoughtful about the challenges facing the newly diagnosed adults walking out their door and family and friends less frightened by the stigma of autism.  

While we wait for this dynamic to change, there are things we can do to make it easier and less painful for others like us to move toward understanding, accepting and liking themselves. We can be seen and heard as we are, not as others expect us to be. We can work to help people not like us understand the breadth of expression that comes with autism and that we aren’t “broken” or all the same. And we can reach out so that people like us feel less alone and more connected, regardless of whether or not they are formally diagnosed.

No one should feel alone on this journey.

Follow this journey on Lost Words.

Lead photo source: Thinkstock Images

Brittany Miller’s son, Granderson, loves fire alarms. The 6-year-old on the autism spectrum knows everything there is to know about fire alarms, from the model of the alarm down to the noise it makes. During a routine trip to the local supermarket in North Muskegon, Michigan, Granderson did what he does best, showing off his knowledge of the grocery store’s alarms. Unfortunately, his enthusiasm drew in some unwanted attention.

“At the supermarket that day he wasn’t being as loud as he is at home, but he was beeping consistently and flapping every time he saw a new fire alarm,” Miller said. “He would point to each one and tell me the brand, make, and model number that each fire alarm was and then he would imitate the noise it made. He would make the beeping noise until he saw another one and he did this the entire time.”

Miller considered her trip to the store a success until she found a nasty note in one of her shopping bags. Miller shared the note, which reads “Buy that kid a muzzle!!”

“He wasn’t screaming, crying, or throwing a fit, he was simply making noise to drowned out the noise around him,” Miller wrote on Facebook. “It’s a coping mechanism and it’s his “stim” (stimming is self regulating behavior most prevalent in children with autism). I’ve learned to tune it out and while I fully realize other people haven’t, by telling him NOT to do it is ripping away his safety net and stripping him of his ability to cope.”

While the note upset Miller, she said she doesn’t hate the person who left it in her bag. “After the hurt and anger subsided, I then felt sorry for that stranger that walks around every day feeling so angry and disgruntled with their own life that they feel the need to judge somebody else’s,” Miller told The Mighty.

After reading the note, she crumpled it in her hand, in case the person who left the note was watching to see her reaction. Miller then smiled at her son, who was still making fire alarm noises, and walked out of the store with her head held high.

Her advice to the person who left the note behind: if you see behavior you don’t like, ask don’t judge. “If that person would have approached me or my son and questioned his fire alarm noises, or even just made a statement about it, my son would have been the first one to greet them with a smile because he is thrilled to death when someone actually wants to talk to him about fire alarms!”

When I was a child I struggled with many things because I was unable to live up to society’s expectations. I was unable to think “inside the box.” I could only think outside of the box. When I wasn’t able to do things in a way people thought was “right” or “normal,” I was made to feel as if I was wrong, incapable or defective. I was the type of person who asked questions or searched for a reason or purpose. When I did these things, people told me I asked too many questions or they said I spent too much time looking for a meaning, reason or purpose behind things. Too many times in my life I heard the statement, “Why can’t you do this (or that) like a normal person?”

As a kid I had a great talent for art. I could draw and paint. I won art contests, got awards for my art and sold a few paintings before graduating from high school. After high school I gave up on art. I went to college and passed all my business courses without reading the book but failed my academic courses because I had a different style of learning. I dropped
out of college when I became homeless.

As an adult I wrote a couple of plays, and then I gave up on playwriting. Then I wrote poems. I won poetry contests and attended poetry readings, but then I gave up on poetry. My next venture was writing books. I published a book, and then I gave up for a while, and then I started back. I wrote another book and gave up on writing again. Now I’m
getting back into writing.

The reason I gave up so many times and on so many things was because I lacked the support I needed in my life. The people I knew assumed that because I survived abuse and overcame homelessness I was strong and I could deal with life alone because I had done it all my life. The truth was, I was not as strong as people thought. If someone had attended my art shows, plays, poetry readings and awards ceremonies then maybe I wouldn’t have been so quick to give up. It is a painful feeling to sit alone and watch other people sit there with their loved ones. It is painful to their loved ones cheer them on. It is even more painful to have strangers and acquaintances compliment you and then say, “Your parents must be so proud.” All you can do at that time is pretend to be happy and thank the person while at the same time feeling an emptiness deep inside of you.

adult making the peace sign When you have autism spectrum disorder (or any disability) it is hard for many neuro-typical people to understand your pain and struggles. Through the internet and social media I’ve met a lot of people who understand what I’m going through and why I think and feel the way I do. Through the internet and social media I’ve met a lot of people who are supportive of my talents, gifts, skills and ideas.

If you have a child with ASD (or any disability or differences), never give up on them. They might not be the child you wanted or they might have behaviors that are difficult for you to deal with, but they still need your support. If you are a family member and you notice a child’s parents are mistreating them, do something. Every child (with and without disabilities) needs to know there is someone out there they can trust. They need someone to believe in their dreams, ideas and abilities, listen to them and help them through their struggles. Every child needs someone to give them that extra push and to encourage them when they feel discouraged. No matter how “mild” or “severe” a child’s disability is or how different the child may seem, every child needs support. Not every child will grow up and do “great” things by society’s standards, but the important thing to remember is the child has a right to become as great as they can be.

A viral Facebook post is re-enforcing a critical point: you don’t need to host an “autism-friendly” event to make shopping a pleasant experience for people on the autism spectrum.

Gem Salter and her husband recently took their 6-year-old son, River, to Clarks to buy a pair of shoes for school. She posted about her experience on the store’s Facebook page, and it quickly garnered attention. As a person with autism, shopping can be overwhelming for River. “Being autistic, he really struggles with crowds, long queues and noisy places,” his mom explained on Facebook. “I knew there was no way he would cope with that environment so I explained the situation to a member of staff.”

That staff member was Aaran Daniels, who, upon hearing of River’s sensory sensitivities, found a quiet place for the young boy to try on shoes. “Without hesitation, Aaran led us away from the noise and crowds to a staff room and placed a Do Not Disturb sign on the door,” Salter wrote. “He was very patient with River, who was anxious, and went and got lots of different shoes for him to try on.”

After the fitting, Daniels invited the Salter family to come back before opening hours for future shoe fittings. Daniels willingness to help their family was autism acceptance at its best, Salter said.

Since Salter’s post last week, thousands of people have commented, many sharing similar experiences. “Aaron is also the guy who helped get the right pair of school shoes for my daughter last week. She has Down syndrome and will say yes to any question so asking if a shoe is comfy or fits well just doesn’t work. It was really hard getting a good fit and Aaron was really patient and just kept trying pair after pair! Eventually we got some! A lovely guy & a credit to the store,” Sam Gee wrote.

You can read Salter’s full post below.

h/t Scary Mommy

Two weeks ago, I let my heart get on a bus and go to kindergarten for the first time. He wasn’t sure what to expect and neither were we. But he walked determined, straight to that bus and got on without even looking back.

Meanwhile, this momma cried. I cried sad tears because my baby would no longer be with me all day… someone else would be looking out for him. I cried scared tears because I knew he was extraordinary and he was different than a lot of the other kids getting on buses that morning. I was scared of the harsh comments and weird stares that may be directed at my boy because he has autism. I cried confused tears because what the heck were we thinking?! Letting him go to school by himself, in a mainstream classroom? Were we making a mistake? Was this the right move? Would he be OK?

Becky and her son

I’ve done a lot of firsts in my lifetime. First tooth, first drive, first dance, first kiss… But all that is slim to none compared to this first. This was the first time part of my soul was walking around, experiencing new adventures, and I wasn’t there to protect him. I wasn’t there to watch him and let him know it was all going to be OK. He had to process through his day on his own, or at least until he came home. It was seriously the longest day ever.

And it was hard. So hard.

I want him to do this, but living with open hands is no joke. “Here God, here you go. Here’s my most precious thing and I’m entrusting Him to you because I can’t be there, but you can.” Oh dear Lord, it’s freaking hard.

And I have to do this every day?! Part of me wishes he would stay close to home and close to my heart for forever, but I also know he needs to go. He needs to see the world through those amazing blue eyes, innocent and full of wonder. He needs to experience things for himself and learn how to work his way through it all without Mommy or Daddy holding his hand. Because we won’t always be there, and we shouldn’t be.

My son David is a strong, independent, amazing boy and just because he has autism doesn’t mean he will not shine and thrive in this new place in life. He was born to shine. He is ready, even if his parents are not.

So please be gentle with my boy, kindergarten. You don’t know how lucky you are to have him! Don’t worry about us, parents. We can do this. This letting go thing… I think.

It’s just hardest. The real hardest.

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